Patient Voice

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

So, a very good morning to you fellow humanoids and sufferers out there with chronic illness. Yes, it's been quite a day indeed. I was up early in the usual pain through the autonomic dysfunction and well, I've had enough. I completely had enough. It's all very well having progressive MS, but through no fault of my own, this autonomic dysfunction has caused me great issues indeed.

Back in the 1980s I had an injection for hay fever and it appears that many people who had that same injection have now started to experience autonomic dysfunction at some levels so they stop that injection because it caused problems. Now I'm trying to make people understand that it is not always multiple sclerosis that causes issues and that I have autonomic dysfunction caused by histamine reactions in the body. My body cannot stand histamines whatsoever. It cannot even stand food that hasn't any histamines that causes a histamine reaction in the body. So I have to be so careful with everything I eat and summer is a nightmare. Plants, hay-fever- yes, you get the picture. It's a living hell for me.

So, as you know in November the ambulance was called and I refused to go into hospital. They said I was going to have a stroke due to something on the ECG being weird, and I told them I know what the issue is. It's my autonomic dysfunction and they sort of looked at me and well, they were really, really nice people and I signed a piece of paper and I said I'll have it all dealt with locally So that was back in November.

The goblin keeps track of all of it. Every “we’ll get back to you.” Every delay. Every time nothing actually happens.

I managed to see a doctor in November or was it December? And then I asked to see a neurologist about everything that was going on. I asked the MS nurse, I asked the doctor, and well, the MS nurse got back to me and said that the neurologist had said who I haven't seen or heard of in five years said to the MS nurse, you have to see an immunologist. It's got nothing to do with neurology. Yes, so I'm in this circle now where the neurology team don't want to know. and to try and get an appointment to see a immunologist is a joke. So I'm thinking, will I ever get to see one? I don't think I will. Unfortunately, my mind has turned into goblin brain. And as a goblin brain, that means I'm probably going to pals because I've had enough of all this bullshit. So yeah, it's been a real mind fuck of a morning.

Neurology says “not us.” MS team shrugs a bit and passes it along. Then I get told “you need immunology.” Immunology? Good luck getting anywhere near them unless you can bend time and bureaucracy itself.

I’ve had enough.

Enough of chasing things that should already be happening. Enough of repeating myself like I don’t exist beyond the last conversation. Enough of feeling like I’ve somehow got to prove I deserve to be taken seriously.

This is about what it feels like to get stuck in something that doesn’t move, while you’re the one dealing with the consequences.

I refuse to get to stressed over this still.. wishing everyone peace healing love and light no matter who or whatever you are ....

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

@goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

A love-letter to MS self-advocacy, wrapped in barbed wire

There’s a point in this MS journey where the penny drops — not the diagnosis, but the darker penny:

No one is coming to save you.

Not the neurologist with the framed qualifications. Not the nurse who thinks fatigue means “sleepy”. Not the turmeric-worshipping cousin who thinks they’ve cracked your nervous system with a spice rack.

They can stand beside us. Support us. But they do not live in this body.

They don’t feel lightning legs at midnight. They don’t taste steroid-metal at 3am. They don’t forget how spoons work mid-breakfast.

We do.

So when a treatment doesn’t fit, when the side effects steamroll you, when the plan feels wrong — that’s when the real fight starts.

Because if you don’t speak, you vanish.

THE DISAGREEMENT MOMENT

You sit in a room lit like an interrogation chamber. White coat opposite. Clipboard poised. Confidence radiating like WiFi.

You say:

“This treatment is making me worse.”

And you watch that look happen — the blink, the polite file-away, the mental note:

“non-compliant patient.”

Medical disagreement is treated like disrespect. Not curiosity. Not collaboration. Disobedience.

And you think:

“Why are you holding the map when I’m the battlefield?”

THE TRUTH THEY RARELY ADMIT

MS is chaos wearing a nervous system like a borrowed coat. It mutates. It hides. It laughs at predictability. And sometimes — yes, brace for impact — the patient knows more. Because we're the ones living the symptoms, not studying them. Because we feel every electric misfire, every bladder rebellion, every cognitive fade. Because we are the data in motion. If we don’t advocate for ourselves, we become spectators in our own disease. Not happening.

WHEN YOU SAY NO, YOU’RE NOT REBELLIOUS — YOU’RE ALIVE

We’re trained to nod. To thank. To comply.

But disagreement is not disrespect it’s self-defence.

You’re not awkward. You’re not dramatic. You’re not “difficult.”

You’re protecting the only nervous system you’ve got.

And sometimes survival is two syllables long:

“I disagree.”

WORDS YOU CAN USE NEXT TIME YOU’RE IN THAT ROOM

Steal these. Tattoo them mentally. Use without apology:

🞂 “This isn’t working what else is available?” 🞂 “Slow down, brain fog is real.” 🞂 “Show me evidence, not reassurance.” 🞂 “I don’t feel heard right now.” 🞂 “I want options list them.” 🞂 “No.”

That last one is a grenade. Pull pin when needed.

FINAL TRUTH

Some doctors will respect your voice. Some will hate it. Some appointments will feel like war. But silence is a slow suffocation. Speaking up is oxygen. Say the hard words. Own your body. Be heard even if your voice shakes through every syllable. MS can take many things but not your agency unless you surrender it. And you’re not surrendering anything.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

@goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ